The In-Between of Round Two and Three of Chemo

This second round of chemo was so different from round one. I had the advantages of knowing multiple symptoms and how to treat them. Going forward, the first Monday after chemo, I know my tongue will start to feel burnt. The first round, I didn't know what was happening, and, by Tuesday or Wednesday, I had mouth sores and blisters. These took up significant energy by making it harder to eat and making sleeping through the night painful. Now, I know about "Magic Mouthwash." I get this thick, flamingo-pink liquid from Walgreens, there are no ingredients listed, and it helped me avoid any mouth issues once my tongue began feeling burnt.

Chemo makes follow-up symptoms feel like whack-a-mole. You manage three and another pops up, followed by another. I can feel chemo brain. I forget words and on the day after chemo, when I am still buzzing on the steroids from my chemo infusions, Becky kindly said that I had already told her that story two other times. Individually, none of the symptoms on their own are enough to be consuming. But the constant drip of fatigue, and this symptom, and that symptom, definitely impacted me more this round.

In addition to hot flashes, I can now say I'm versed on hemorrhoids. Balancing a "normal" GI week barely feels like a goal---two consecutive days seems more respectful of reality. Last week, I oscillated between diarrhea one day and painful constipation the next. I learned that Ducolax (a stool softener) should not be the one I should use--it can basically, over time, make my body dependent on its reactions. Miralax and dissolvable, drinkable fiber are the way to go.

Another word I struggle to spell and am now disappointingly familiar with are abscesses. I always want to understand the "why" behind each symptom so I can grown into an understanding of how to avoid them or treat them the next time. In talking with my oncology team and a local provider this week, the only "why" is because I am neutropenic and my body cannot fight off infections. It's not a matter of showering more than once a day or hygiene failure. I just can't fight infections. These abscesses have been painful and tiring to manage.

After only one round of chemo and the follow-up blood work, I was told that I am neutropenic. Neutropenia is a decrease in the number of white blood cells, thus increasing my risk of infection. These cells are my body’s main defense against infection. Chemo can create neutropenia by killing fast-growing cells in the body—both my good cells and cancer cells. Check out page two of this CDC guide to know how you can support your loved ones who are autoimmune compromised. Basically, you protect your loved ones by staying home when sick or exposed and do good hygiene, like wash your hands in their homes.

I researched more on neutropenia last night and I feel a boiling and rolling anger growing in me for the next person who stink eyes me for wearing a mask in a grocery store.

Normally, I just hold eye contact and pull off my hat so they can take in my bald head and make their own assumptions. I am getting madder, though I'm not certain what is the value of anger right now for me. I really don't need to devote energy to being on guard. I hope some day our country can develop the cultural value of empathy so when we are sick, we stay home and mask up when we need to go to public places to protect others and those who already walk their own health battles. In any biblical or religious sense, this should be seen as acts of love and the standard.

Anyways. These symptoms have made me feel wary of interaction. Last Saturday, I had a rough evening where I stood in front of the mirror. My bald head. My port scowling up against my skin. Red skin blemishes on my cheeks that are new. My body that has already shows the lost muscle mass of two months. Bags under my eyes. Strings of clear snot randomly dripping down (One odd thing now is sometimes clear snot just runs from my nose and I can't sense it).

I glowered at the mirror, angry that symptoms were happening and I wasn't clued in on the signs in my own body. I had not felt this removed and disconnected from my body since puberty. Things were happening to me instead of me being grounded and connected in my body to be present to changes. Always, during these times of disconnect, I want to go out into the night and stand in dirt or by water and just reground. I often end up barefoot in my urban backyard just trying to feel my body on the earth.

Cancer after last year has been a trip. Last year, I trained for a trail run that went just over 18 miles and had 7,800 feet of gain. This was my most daunting physical feat I've ever taken on for myself. I built up my balance and small muscles so I could navigate moving up and down talus.

I learned to honor my body with the right fuel, liquids, and rest. I learned how to listen to my body and ask if a discomfort or tightness came from a physical issue like an overstraining muscle, hot spot in my shoes, or if I was caving because I needed to stop for water or nutrients. If not that, was I holding tension in my mind? Was the thought based in reality?

I learned that any tension in my body or mind tightened my breathing, which then created more tension in my breath and body. I learned to honor my mind, body, soul, and breath.

I ran with a goal in mind---always the distance and less so the time. But I never was bent in commitment to the goal. When the trees gave up their sap in the first days of spring, I always gave myself the time and space to take this in, be present, and celebrate this jubilant sign that spring was coming with strength. On great views, I stopped to sit and take in the tree line, the lichen, the sky. Jake always tucks under my left arm and leans into me when I stop. I never skip these moments to feel my feet on the earth, the air on my skin, and the presence of my dog of my lifetime. If I was feeling light and free, I'd run beyond my goal. If my body wasn't collectively feeling right, I remained curious and unjudging so I could learn how to better know and support myself. At the top of a hard climb or coming down where I felt my body agile and powerful, I felt euphoric gratitude for the strength of my ankles, quads, calves, lungs...

Now, it's a different challenge. I don't know what is going on in my body. I try to be aware and assess. I didn't get it right this week. I couldn't have--I've never experienced these symptoms. I definitely experienced more discomfort than necessary. Medications are now finally working. I am frustrated that this happened on week three---the week before chemo where I have rebounded as much as I will before the next treatment, and when I am my highest level of possible wellbeing. I wanted to get out and move on the trails and sit with the views. I am going to try today. It looks like rain but I simply am not going to be bothered by rain because the time to be on a mountain is going to be out of my control in 72 hours.

Yesterday, Mike, Dad, and Mary and I went fishing up near Hauser Lake. I ended up reading, sketching the cliffs, and taking in the birds (eagles, geese, ducks, and osprey). I loved watching their lines cast out, the finesse, dance, and patience of bringing a rainbow trout (or 8-foot stick) to shore and the quick handling and gentle release. There were quite a few people out fishing, and in the beginning, I hiked up to the streamside cliffs to get a better view, sit with Jake, and read "Ruthie Fear." It felt so good to go up loose trails and feel the tug and pull of my muscles above my knee, to go off the trail and step intentionally, feel the trees, sit on the hard rocks (see, medications have been working--alleluia!).

Coming back, it felt so grounding to listen to the water. I could sketch trees all day and there were these grand cliffs with interlocking, ribbed columns and red streaks horizontally across and pines somehow held steady to the face. It felt so good to study and try to see the lines and depths. I loved being around my people, the conversations, and the quiet experience of being on the water together. This all felt like some sort of coming home. Being and observing in nature always steadies my body and mind.

So, round three awaits. I met with my social worker Friday. I am trying to balance knowing and preparing and knowing too much. I read a blog from a HER2 breast cancer survivor yesterday and radiation, at least for her, was not what I was I was anticipating for myself. She experienced hot, red burns and deep fatigue. I want to look into the long-term impacts and required healing after chemo, but I haven't wanted to look that far forward. I don't want to know all the losses and grief and suffering ahead. And also, I do want to know.

And, honestly, sometimes I still feel like I am going to get the call that my results were mixed up and I don't have cancer, apologies. But. None of these are real or now. I don't want the possibilities of the future to rob my present, and, I want to be prepared. Already, I see I am stronger on how to self-advocate. I need to get better at resting. I am thinking of how I build a work schedule so I can rest more and nourish myself for the weeks and treatments ahead. I am learning. I guess now that is my only role in this task.